Use this page to help guide the questions you ask your surgeon (or prospective surgeon) before total gastrectomy. Bring a pen, and possibly a notebook, to your appointment. You can print and fill in answers below each question and should feel free to add any other questions that you may want answered.

1. How many total gastrectomy operations do you perform each year?
2. Will I meet with a registered dietitian before surgery? (Meeting with a registered dietitian before surgery is as important as meeting with one after.)
3. What are some of the anticipated complications of this operation?
4. What is your personal complication rate with this operation? (Most surgeons keep track of their own complications, or their hospital likely does, and they will be forthcoming about their own outcomes and how they manage them.)
5. What will my follow-up with you be? (If the surgeon will not be your primary point of contact for follow-up after surgery, make sure to ask who will be responsible for your post-gastrectomy care.)
6. Do you check margins in the operating room to confirm that all gastric tissue has been removed? (For patients with CDH1, this answer should be yes as recommended by an international group of experts.)
7. Do you routinely place a feeding tube during this operation?
8. How often do you observe esophageal strictures after this operation? (An esophageal stricture is an abnormal tightening or narrowing of the esophagus.)
9. How long can I expect to be in the hospital?
10. Can I speak to other patients who have had this operation with you?

You are not alone in this. As you read through the following information, be on the lookout for some of the encounters that may arise on your own journey so that they are easily identifiable if they show up for you. It is important to remember that no two courses are the exact same and that this material will not be identical to your own personal experience.

The Pre-Operative Experience

Whether you move forward with total gastrectomy (TG) or ongoing surveillance, stress may arise in the decision-making process. It’s likely that you will be given a lot of information during this time from members of the medical team, friends and family. Ultimately, the decision is yours — and that can be scary!

Here are some tips for decision making:

1. Gather data. Talk to the experts! Find a team with experience and knowledge in hereditary diffuse gastric cancer (HDGC) and total gastrectomy. Allow your knowledgeable team to give you information, pros and cons about all of your options.
2. Find resources. Websites and or social media communities can be a great place to hear about other individual’s experiences that may be similar to yours. These communities can point you to patient resources such as those provided by non-profit organizations and the National Cancer Institute's Center for Cancer Research.
3. Talk with friends and family. Your friends and family are and will continue to be a key part of your support system throughout this journey. Be open with them about your preferences and communication styles. Do you want their opinion? Do you want their unconditional support? Speak up and let them know what you want or need.
4. Connect with your values. Values are the directions we want to go in life. Values remain even in the presence of pain, anxiety, fear and stress. When making a tough decision, let your values (not your pain) guide you.

The Post-Operative Experience

If you decide to have a total gastrectomy, there are some challenges that lie ahead. Your lifestyle will change drastically and that can be tough, especially in the post-operative stages.

Here are some challenges to be aware of: 

Relearning how and what to eat

It’s very likely that your team will give you a new set of dietary suggestions. A sample of a post-gastrectomy diet can be found in "Diet and Nutrition After Gastrectomy: Your Plan." These guidelines set you up for the best possible outcome after your TG. But everything you know about food and eating might change. Keep an open mind and ask questions!

Eating used to be second nature. You’ll be working against all your old habits to shift your new feeding schedule. Sometimes forgetfulness will be your biggest challenger. You may want to try making sticky notes and placing them in frequently visited places around your house (like mirrors or door frames) as reminders!

The comparison game

No two total gastrectomy journeys are the same. You may find comfort in an online community or with family who have gone through TG. However, our minds are so good at evaluating and we might get hooked on “The Comparison Game.” Notice your mind’s “shoulds” (for example, “I should be farther in my journey by now” or “I shouldn’t be having this difficulty”) and remind yourself that your experience is yours and yours alone, not anyone else’s. 

Eating as a social activity

Birthday parties, special occasions, and simple family nights in often involve meals. Early in your post-operative journey, restaurant menus will probably pose difficulty for finding meals that fit within your dietary guidelines. Nevertheless, you can learn to enjoy the time out and this time spent with loved ones even if you aren’t eating the same things as others at the table.

Proper planning like looking at the menu ahead of time or eating before the activity may alleviate the discomfort during the outings. It’s normal for your mind to have thoughts like, “Will other people notice?” You might find it beneficial to think of how you will answer questions that others may have — if you want to answer them at all — ahead of time.

Pain and physical discomfort

Some people experience pain in their post-operative period. This pain might take the form of bile reflux, abdominal discomfort or nausea. It’s important to maintain your eating, drinking and medication regimen even in the presence of discomfort.

You will be challenged at first with thoughts like “I can’t eat right now” or “I’ll take my vitamins when the bile reflex goes away.” These are normal and you can anticipate that they will show up! We can practice not taking our minds so seriously. While our minds are often trying to protect us, they’re not always the most helpful voice!

Treatment adherence

Adherence to medical regimens often decreases as time moves on. Keep this in mind as a potential challenge when you start feeling better. Make notes, create reminders and get in touch with your values so you continue to adhere to your medical team’s guidelines.

Long-Term Follow Up

Deciding to have a total gastrectomy is a decision that will change your life and how you live it. Here are some situations to be aware of as you continue to lead your life long-term after TG.

Change in identity

Some people experience a shift in their sense of identity post-TG. It’s possible that your body will change how it looks or your priorities and sense of career will shift. Some people even switch jobs to fit their new lifestyle. This is normal! Use this as a time for flexibility and sense of exploration. 

Difficult emotions

As post-operative life starts to settle down and your lifestyle changes turn into habits, sometimes new emotional experiences step in. Survivor’s guilt may be one of them. Survivor’s guilt is common experience among cancer survivors. It is a particular type of guilt experienced by those who have survived a life-threatening situation, like HDGC, when others have not.

Unique to certain types of diseases, HDGC has a hereditary component. If you have a child or grandchild who also carries the gene, you may experience guilt or feelings of fault. This is a reminder of the love you have for them and their health. Practice compassion (see below) for these totally normal human emotions! And remember, prioritizing your health journey is a great opportunity to lead by example for your loved ones.

Mental Health Tips and Tricks

Connect with values.

Why are you here? There’s something in your values that is igniting the way. Whether it’s health, family or vitality, our values are the most powerful tool we have to overcome challenges and life’s curve balls. A periodic check in with your values can enhance your ability to stay on track even when life gets tough.

Watch your mind chatter.

Your mind will hand you all sorts of interesting thoughts. Expect it! “I can’t do this.” “I wish this was easier.” “I don’t want this.” The funny thing about thoughts is … they’re just thoughts. We can pay attention to them when they are useful, and we can notice and acknowledge them when they’re not. Imagine you’re on a hillside watching a stream below. The stream holds all sorts of objects: sticks, animals, leaves. What these objects have in common is that they all come and go. So, imagine our thoughts like the leaves. Watch them. Notice them. And repeat!

Self-compassion is your new best friend.

This is hard! You can harness the power of self-compassion to recognize this incredible challenge you’re in. Take pauses throughout the day to notice your thoughts, feelings and physical sensations and to hold yourself and your experience with compassion, warmth and love (just as you would for a loved one). The experience you are having may be unique to you, but the challenge is human.

When to Seek Assistance

Think of mental health assistance like going to the gym: when you preemptively work out your muscles, you’re prepared when you have to rearrange heavy furniture in your home. Mental health is the same way. And just like it’s never too late to start working out, any time is a great time to seek help. If you notice your mood change (like anxiety or sadness) or even if you’re feeling stress or pain, it’s normal! Let a mental health professional (like a counselor, therapist, social worker, psychologist, etc.) help guide you toward your best valued life. You’re still in the driver’s seat of life, but mental health professionals can be great passengers holding a map!

How to Seek Assistance

Finding a mental health professional can seem like a daunting task. Here’s how!

1. Your medical team is your best resource. They may be able to provide you with in-house mental health services or refer you to a community-based practitioner that fits your insurance or financial needs.
2. Use your friends and family as referrals. If you know someone who sees a therapist, ask them to connect you! Even if that person isn’t the right fit, they’ll likely know someone who is.
3. Take to the internet! Psychologytoday.com and contextualscience.org are great places to start the internet search. You can sort by insurance, location and specialty.

Therapy should be a good fit between the individual, therapist and approach. Don’t be afraid to ask questions, like “What will therapy together look like?” or “What approach do you typically take?” Therapists vary in educational background, theoretical approach and areas of expertise. It’s ok to go therapist shopping. In fact, we encourage it!

Conclusions

Mental health is an important part of this journey. Being an active observer of your own experience can help you decide when it’s time to seek assistance. Acute distress is not a prerequisite for mental health treatment. Starting early can help you foster skills for later in the journey if you experience challenges. There’s no time like the present!     

Physical Fitness

It is important that you are physically prepared for your surgery to help minimize the risk of complications after surgery and throughout your healing process. 

Physical fitness for surgery includes good heart and lung function. 

• Any medical conditions, including heart and lung problems, may pose a risk for complications after surgery and should be addressed with your health care team. 
• If you smoke, you should quit smoking, especially since smoking is a significant risk factor for many kinds of cancer, including gastric cancer.
• For at least one month before surgery, get 30 minutes of exercise every day, such as brisk walking, gardening, exercising at home or going to the gym, to promote good cardiovascular health. 

Weight

Even though you will lose weight after your total gastrectomy, most people should not gain weight before surgery. Being overweight or obese increases the risk of complications after surgery. People who are overweight or obese can actually benefit from weight loss before surgery. People who are underweight (very thin) may benefit from weight gain before surgery. 

Talk to your dietitian and health care team about your weight goals before surgery and how to achieve those goals.   

Diet and Nutrition Tips to Prepare for Total Gastrectomy

These tips will help you prepare your body for surgery. They also help you start to learn how to eat after a gastrectomy. 

Contact your registered dietitian if you have any questions about how to apply any of these tips to your lifestyle. 

1. Review “Diet and Nutrition After Gastrectomy: What You Should Know”
That packet describes the dietary and lifestyle changes you will have to make after surgery. These tips will also help you learn how to eat after a gastrectomy.  

2. Practice eating slowly and concentrate on chewing your food well.
Chew your food until it is pureed before you swallow.

3. Eat smaller meals more often.
After surgery, you will feel full after very small amounts of food (2-3 ounces). Start eating 5 or 6 small meals per day instead of 3 larger meals. You may need to adjust your home, work and/or school schedule to allow frequent meals.

4. Practice eating meals without drinking liquids.
After surgery, you will need to separate solid food from liquids by at least 30 minutes, so it is important to start getting used to eating your meals without a beverage. Drink fluids 30 minutes before or 30 minutes after your meal.

5. Start reading nutrition labels for added sugars. 
After gastrectomy, you will need to avoid added sugars to prevent side effects such as dumping syndrome (described in “Diet and Nutrition After Total Gastrectomy: What You Should Know”). See the detailed instructions in “Diet and Nutrition After Gastrectomy: Your Plan” to learn how to read the Nutrition Facts labels for added sugar. Find products that do not have added sugar to replace any products you eat now that do have added sugar. Taste test different brands to find products you like. 

6. Learn which foods are high in protein. 
After surgery, your body will need a lot of protein to heal. Since you will feel full quickly, it is very important to have protein at every meal and snack so that you can meet your protein needs. Use the Nutrition Facts labels on the side of food packages to find foods high in protein. Start having a high protein food with every meal and snack, such as a no sugar added protein drink, bar or yogurt. See “Diet and Nutrition After Gastrectomy: Your Plan” for more examples. Taste test protein drinks without added sugars, as they can help you meet your hydration goals after surgery as well. 

7. Take good care of your teeth. 
Since you will need to chew your food extra carefully after total gastrectomy, good oral hygiene is key. Practice good oral hygiene every day, including brushing and flossing your teeth. See your dentist for regular cleanings and make sure to address any known dental concerns before your surgery. 

8. Talk to your dietitian about vitamin supplements before your surgery. 
Tell your dietitian about any supplements you are currently taking. Depending on your supplements, lab results, past medical history and/or other factors, you may need to take specific vitamins before surgery to correct low vitamin levels. If you do, your registered dietitian will give you specific instructions. You may find it helpful to print this page and write your instructions below.

You can expect your recovery from total gastrectomy to take many months — typically from 6 months to a year. Physical recovery from surgery (healing) alone takes 6 to 8 weeks. The first 3-6 months after total gastrectomy can also be the hardest emotionally and psychologically for the patient and their family, too. There are many physical and psychological adjustments that simply take time. 

Remember that recovery may not always feel steady; there will be both good days and bad days. You may have days where you eat more comfortably, eat more frequently and tolerate foods, fluids and vitamins well. You may also have days when eating is more difficult or your symptoms feel worse. Every patient’s experience is different. Remember to talk to your health care team if you have any concerns. 

Even if you feel that your progress one month after surgery is better than expected, at three months you may feel that recovery isn’t going fast enough and/or feel discouraged by the time it takes to recover. You may find it helpful to keep a list of milestones and the progress made after your surgery. Talk to your health care team about any concerns.  

At six months post-surgery, most patients feel as though they have “turned the corner.” This is often associated with having incorporated the new diet and lifestyle habits into your daily routines and having those habits start to feel like second nature. 

By one year post-surgery, most people feel as though they established their “new normal,” meaning the post-operative diet and lifestyle changes are now a part of their normal life.

Weight Loss

You can expect to lose weight rapidly during the first month after surgery. The rate of weight loss will eventually slow down and you may have periods when your weight is stable for days to weeks before dropping again. However, it typically takes about 6-12 months for you to reach a stable final weight. After 6-12 months, some patients can regain a few pounds over several months to years. 

Talk to your dietitian to get specific recommendations to help you avoid losing weight too quickly, to avoid losing too much weight or too much muscle mass, and to maintain a healthy weight long-term after gastrectomy. Note that it is harder to regain weight after a total gastrectomy and most patients remain well below their pre-surgery weight for the rest of their lives.  

Lifestyle Modifications

If you were very active before total gastrectomy in sports, exercise or other physical activities, or if you worked a physically demanding job, you will need to modify your activities after gastrectomy. For 8 weeks following surgery you will need to avoid heavy lifting (more than 10 pounds). It can take 6 months to a year for energy and stamina levels to return to pre-operation levels.

Lifelong, you will need to be able to eat small but frequent meals throughout the day. You will also likely need to avoid certain positions that trigger bile reflux (you can read more about bile reflux in “Diet and Nutrition Total Gastrectomy: What You Should Know”). Therefore, some people have had to adjust their work, home or school schedules, change careers/jobs or apply for special accommodations to meet their diet, nutrition and lifestyle needs after total gastrectomy. 

Bone Health

Gastrectomy increases the risk of bone density loss. Loss of bone mineral density can lead to osteopenia, osteoporosis and increases your risk of fractures. These problems can happen months to years after gastrectomy. However, the exact causes of bone density loss after gastrectomy are still unclear.

The causes of low bone density after total gastrectomy may include: 

• Decreased absorption of calcium, which is needed for healthy bones
• Decreased absorption of vitamin D which is needed for healthy bones
• Weight loss after total gastrectomy, which may also impact bone health 

Because of the loss of stomach acid and the bypass of the first part of the small intestine (duodenum) after total gastrectomy, calcium from food is not absorbed well, so calcium citrate supplementation is recommended. 

The American Society for Metabolic and Bariatric Surgery (ASMBS) has guidelines for vitamin and mineral supplementation after bariatric surgery, including Roux-en-Y gastric bypass, a similar surgical procedure to gastrectomy. 

These guidelines recommend the following:

• Take 1200-1500mg per day of elemental calcium in the form of calcium citrate
  • Calcium citrate is the form of calcium best absorbed without stomach acid
  • Take your total calcium citrate in multiple doses (up to 500 mg each) for best absorption
  • Take calcium citrate at least 2 hours apart from all oral iron supplements
• Take at least 3,000 international units of vitamin D supplements
  • This dose can be increased to maintain a normal range of blood levels of 25-OH vitamin D (vitamin D levels can be measured from a blood test)
  • Note: Vitamin D can be included in your bariatric multivitamin You can read more about vitamins and minerals in “Diet and Nutrition After Gastrectomy: What You Should Know”
  • Consider having a bone density scan (dual-energy x-ray absorptiometry, or DEXA) two years post-operatively 

To minimize the risk of bone density loss after total gastrectomy, follow these tips: 

• Talk to your dietitian about which calcium citrate and vitamin D supplements are best for you
• Talk to your team about exercises and physical activities to keep your bones strong
• Talk to your team about monitoring your bone density after total gastrectomy
• You may need medications to treat low bone density 

General Guidelines and Issues to be Aware of

Before your surgery, your stomach played many important roles in your digestive system. The stomach:

• Held a liter or more of food
• Ground food into a purée for digestion and absorption
• Prepared food for absorption using digestive enzymes and stomach acid
• Controlled the release of food into the small intestine
• Sent signals to your brain when it was time to eat again (i.e., when you were hungry)

After total gastrectomy, your digestive system:

• Holds a smaller quantity of food
• Cannot grind food
• Cannot digest and absorb every nutrient in food effectively
• Will not send you the same signals to tell you to eat

To compensate for these effects, you will need to:

• Eat smaller meals, having at least 6-8 small meals per day
• Avoid drinking a lot of fluids with your meals
• Chew your food very well to make it easier to digest and absorb food. Chewing your food well will also help avoid pain or discomfort after eating
• Take the recommended vitamins every day to make sure you are getting all the nutrients you need
  • See the section on vitamin supplements later in this packet
  • Also talk to your dietitian about your individual needs
• Have small meals every few hours even when you don’t feel hungry. It will take time to learn your body’s new hunger cues. These may include feeling tired, weak, dizzy or light-headed

Side effects to expect after total gastrectomy

• Weight loss: Your calorie and protein needs are higher right after your surgery to help you heal, but your body will not be able to absorb everything you eat. You will also feel full quickly and may forget to eat without your usual hunger cues. For these reasons, weight loss is expected after total gastrectomy.
  • Weight loss is fastest the first month after surgery. You can then expect gradual weight loss for 6-12 months after gastrectomy. This weight loss includes loss of both fat tissue and muscle mass.
  • Speak with your dietitian to get specific recommendations to help you avoid losing weight too quickly, to avoid losing too much weight or too much muscle mass and to maintain a healthy weight long-term after gastrectomy. Note that it is harder to regain weight after a total gastrectomy.

• Early satiety, or feeling full quickly. Right after surgery, you will feel full after only a few bites of food, approximately 1-2 ounces of food at a time (the amount that fills a shot glass).
  • To get enough nutrition despite early satiety, you will need to eat high-calorie and high-protein foods every 1-2 hours until you are able to eat larger amounts.
  • You can find guidance on your meal plan in "Diet and Nutrition After Gastrectomy: Your Plan."
• As your body adapts after surgery, you will gradually be able to increase portion sizes to child-size meals. This usually happens between 6-12 months after surgery.
• Anorexia, or not feeling hungry. After gastrectomy, your body does not have the usual signals to tell you to eat. Therefore, you may forget to eat or forget to eat often enough to meet your nutrition needs.
  • To counter the effects of anorexia:
    • Eat on a schedule, rather than waiting until you feel hungry.
    • Set timers or other reminders to eat and drink throughout the day.
    • If you find it hard to eat when you do not feel hungry, finds ways to relax during mealtimes such as watching TV, reading a book or playing a game while eating.
    • Try protein drinks, which may feel easier than chewing solid foods when you do not feel hungry.
• Nausea: You may feel nauseous if you eat too much or don’t chew your food well enough.
  • To avoid feeling nauseous, eat only small amounts of food, eat slowly and chew your food thoroughly before swallowing.
  • If it has been more than two hours since your last meal or snack, nausea may be a hunger signal. Try eating a small meal, making sure to eat slowly and chew your food well.
  • If you are nauseous before eating, choose light, low fat, cold foods that do not have strong smells or flavors.

• Constipation: You are more likely to become constipated if you do not drink enough fluids, and it can be difficult to drink enough fluids after surgery because you feel full quickly (early satiety).
  • To avoid constipation:
    • Sip on fluids between your meals.
    • Aim for at least 64 ounces of fluid per day.
    • Choose unsweetened protein drinks for some of your small meals.
    • Take a short walk between meals and snacks.
• Talk to your dietitian about when it is safe to add high-fiber foods back into your diet. Eating fiber without enough fluids can make constipation worse.
• Talk to your dietitian and health care team about medications if constipation continues.
• Bile reflux: Without a stomach, you do not produce stomach acid, so you will not have acid reflux. However, you are at risk of bile reflux. Bile reflux is when bile, the digestive liquid produced by your liver, backs up into your esophagus (the tube between your mouth and the rest of your digestive tract). The causes of and treatments for bile reflux are different than acid reflux.
  • To avoid bile reflux:
    • Sleep with your head elevated at least 30 degrees, about 6 inches or more. You may want to purchase a wedge pillow to use at home. You are more likely to have bile reflux if you lie completely flat overnight.

    • Stay upright for at least 30-60 minutes after eating.
    • Maintain good posture and avoid leaning forward at the waist. Bend at your knees instead of at the waist for activities such as gardening, cleaning and picking up young children.
    • Eat small meals throughout the day and chew your food well.
    • Practice the tips mentioned above to avoid constipation because constipation can make bile reflux worse.
    • If bile reflux continues despite taking these physical steps to avoid it, you may need medication. Talk your dietitian and health care team about your options.
• Dumping Syndrome: Dumping syndrome happens when large amounts of food or undigested food pass too quickly into the small intestine. Symptoms of dumping syndrome can happen right after you eat (early dumping syndrome) or hours after eating (late dumping syndrome).
• Early dumping syndrome usually happens within 15-60 minutes of eating and can be triggered by eating or drinking a large portion at once, eating and drinking at the same time or by ingesting food or drinks high in added sugar. (You can learn more about added sugar in “Diet and Nutrition After Gastrectomy: Your Plan.”) Early dumping syndrome occurs when your body tries to dilute sugar by pulling fluid from your bloodstream and tissues into your intestine.
• Symptoms of early dumping syndrome include:
  • Abnormal cramping
  • Bloating
  • Nausea
  • Urgent diarrhea
  • Feeling faint or weak
• Late dumping syndrome occurs 1-3 or more hours after eating too much carbohydrate or added sugar. Your body quickly absorbs the carbohydrate or sugar, causing your blood sugar levels to rise quickly. When your blood sugar rises quickly, your body produces a lot of insulin (the hormone that regulates your blood sugar). When too much insulin is released, your blood sugars drop below normal, causing low blood sugar (hypoglycemia). 
  • Symptoms of late dumping syndrome can include:
    • Confusion
    • Sweating
    • Drowsiness
    • Weakness
    • Dizziness
    • Heat sensation
    • Difficulty speaking
    • Palpitations
    • Tingling in the lips
    • Difficulty concentrating
    • Cold Sensation
    • Double vision
    • Blurred vision
    • Hunger
    • Nausea
    • Fear/anxiety
    • Tiredness
    • Shivering/trembling/shaking
• To prevent both early and late dumping syndrome:
  • Avoid foods and drinks with added sugars
  • Eat small meals often during the day
  • Eat protein at each meal and snack
  • Separate fluids from solid foods by at least 30 minutes
  • Chew food thoroughly
  • Avoid meals or snacks with large portions of carbohydrates (example: fruit, starch) and always eat carbohydrates with protein
• To treat dumping syndrome:
  • If you experience early dumping, sit upright in a chair or lie with the head of the bed at a 30-degree incline to slow the movement of food through your intestine. Eat or drink again as soon as possible to replace what your body did not fully absorb due to dumping.
  • If you experience late dumping, eat or drink as soon as possible to correct your low blood sugar.
    • Choose a soft-textured food (so that it does not take long to chew thoroughly) or a fluid that has carbohydrate and protein.
    • Examples include unsweetened yogurt, unsweetened peanut butter or unsweetened protein drink. Do not use sugar (such as juice or candy) to correct low blood sugar — that will cause you to have late dumping again.

Staying Hydrated After Total Gastrectomy

Since you will feel full quickly and cannot drink large amounts while eating solid foods, you need to sip fluids throughout the day to avoid dehydration. 

Dehydration can lead to constipation, electrolyte imbalances, fatigue, dizziness, confusion and nausea. Chronic dehydration increases the risk of kidney stones.

Talk to your dietitian about your fluid goal. You may want to find a way to keep track of or measure your fluid intake throughout the day, such as a notes app in your phone or a water bottle with markings.

Symptoms of dehydration include:

• Dry mouth
• Dry lips
• Thirst
• Fatigue
• Headache

• Constipation
• Nausea
• Dark yellow urine
• Less frequent urination

To avoid dehydration after gastrectomy:

• Start sipping on fluids early in the day and sip continuously between meals.
• Keep a water bottle with you at all times.
• Don’t wait until you feel thirsty to drink. If you are thirsty, you are already mildly dehydrated.
• Set a timer to remind yourself to drink.
• Use a food diary to track how much you are drinking.
• Avoid caffeinated beverages until you can meet your fluid needs every day.

All decaffeinated, sugar-free liquids (except alcohol) can count towards your fluid goal. This includes:

• Water
• Infused water
• Herbal tea
• Flavored drinks without added sugar
• Sports drinks without added sugar

• Broth or soup
• Popsicles without added sugar
• Protein drinks without added sugar
• Protein water without added sugar
• Milk

If you think you are dehydrated, drink sugar-free fluids with electrolytes such as sugar-free sports drinks. You can also drink sugar-free protein drinks instead of eating solid foods for some of your meals for more fluids.

Contact your health care team if you are unable to drink enough fluids to stay hydrated or if you experience severe dehydration. You may need intravenous (IV) fluids if you are very dehydrated.

Alcohol after total gastrectomy

Alcoholic drinks increase the risk of dehydration. In addition, even small amounts of alcohol can cause intoxication and low blood sugar after a total gastrectomy.

Some studies suggest an increased risk of alcohol use disorder after gastrectomy. Be cautious with any alcohol intake.

Vitamins and Minerals 

You are a high risk for multiple vitamin and mineral deficiencies after total gastrectomy. This includes deficiencies in iron, vitamin B-12, thiamine, folate, zinc, calcium, fat-soluble vitamins A, D, E and K and other micronutrients.

The American Society for Metabolic and Bariatric Surgery (ASMBS) has established guidelines to prevent micronutrient deficiencies after stomach surgery, including gastrectomy. Specially formulated vitamins, referred to as bariatric vitamins, that meet these guidelines result in fewer deficiencies than standard multivitamins.

• Note: specially formulated bariatric vitamins provide vitamin B-12 in a dose and form that can be absorbed without the need for intramuscular vitamin B12 when the oral vitamins are taken daily.

Calcium citrate is the form of calcium that can be absorbed without stomach acid. Take the recommended calcium citrate supplements every day, and take them at least 2 hours apart from any iron-containing supplement, because iron interferes with calcium absorption.

You must take your multivitamin and calcium citrate every day to avoid problems associated with deficiencies, such as anemia, hair loss and low bone density. Talk to your dietitian about which specific bariatric formulated multivitamin and calcium citrate supplements are right for you. Your dietitian can make sure your supplements meet the ASMBS guidelines and are 3 party tested for safety and accuracy.

Dental Care After Total Gastrectomy

After a total gastrectomy, you need to chew every bite of food completely so that your intestines can absorb your food, and you need healthy teeth to do this!

To make sure your teeth are healthy:

• See your dentist before your total gastrectomy
• See your dentist every 6 months after surgery
• Brush, floss and use mouthwash often during the day. When you eat more often, you need to brush your teeth more often to prevent cavities and other dental problems
• Take your vitamins every day to avoid any micronutrient deficiencies. Vitamins and minerals are important for dental health

On this page, we’ve broken down a recommended timeline for how and when to reintroduce certain foods and food groups into your diet after a total gastrectomy. Remember that your experience may be different than someone else’s, even a close relative, and you should work with your dietitian and health care team to adjust this plan to meet your needs.

This plan is broken down into two main phases. Your dietitian will tell you when to begin introducing foods from phase 2 into your diet. The phase 2 plan outlined below will eventually become your lifelong diet.

It is important that you focus not only on which foods you choose, but also on how much of those foods you eat and when and how you are eating them. Follow these guidelines and work with your dietitian to avoid unwanted symptoms and to get the nutrition you need to heal.

Phase 1: 6-8 weeks after surgery

This is your body’s recovery period. Your body needs foods that are high protein to help you heal and to slow weight loss. Your body also needs foods that are easy to digest as your intestine adjusts to digestion without a stomach.

General Guidelines

• Eat often. You need at least 6-8 small meals each day. These meals may only be about 1-2 ounces each (about the size of a shot glass).
• Remember that you will not feel hungry like you used to, but you need to eat often anyway. 
• Choose high-calorie, high-protein foods and fluids for these meals to meet your nutritional needs. Make at least half of your plate protein.

• Eat slowly and relax while eating.
• Chew foods completely, into puree form, before swallowing. Choosing soft, well-cooked foods that you can thoroughly chew will help.
• Drink fluids 30 minutes before or 30 minutes after eating, but not during your meals.
• Remain upright after eating to avoid bile reflux.
• Avoid foods high in insoluble fiber and gas-producing foods. These foods cause abdominal cramping or pain, diarrhea and gas pain as your body recovers from surgery.
• Avoid foods and drinks with added sugars.

Added sugar is different from natural sugar. Added sugar means a sweetener is added into the food as an ingredient.

• Ingredients that mean “added sugar” include sugar, honey, agave, corn syrup, syrup, fructose, dextrose and maltose.
• Avoid sugar alcohols such as sorbitol, mannitol, erythritol and xylitol. They cause gas, bloating and diarrhea. Sugar alcohols can often be found in foods labeled sugar-free.
• Other artificial sweeteners do not cause dumping syndrome. Examples include Stevia, sucralose (Splenda), aspartame (Equal) and Saccharin (Sweet ’N Low).

Natural sugar is sugar that naturally exists in your food. For example, fruit, starchy vegetables, milk and unsweetened yogurts have natural sugar (carbohydrate) that was not added and will not be listed as an ingredient. Foods with natural sugars are safe to eat if you eat them with protein.

Use the Nutrition Facts label to find foods with no added sugars.

How to Read Food Labels for Added Sugar

Example One: Unsweetened Yogurt

Use the label to check for added sugar

• This yogurt has 0 grams of added sugar.
• This yogurt has 11 grams of protein, which is a good source of protein.
• This yogurt would be a good choice for a post gastrectomy diet.

Example Two: Sweetened Yogurt

Use the label to check for added sugar

• This yogurt has 10 grams of added sugar.
• The added sugar in this food is likely to cause early and/or late dumping syndrome.
• This yogurt would not be a good choice for the post gastrectomy diet.

You may find it helpful to use a food diary or app to record what you are eating and drinking. Record the specific food or drink, the amount, and any symptom you have. You can also take notes when you have symptoms after eating, which may help determine the cause of those symptoms.

Bring your food diary to follow-up appointments after surgery. Your dietitian will be able to help you identify foods and/or patterns that are causing any symptoms.

Below, you’ll find a chart that will help guide what you can eat and what you should avoid in each food group as you go through recovery.

Phase 1: Foods to choose and foods to avoid:

Phase 1 Sample Meal Plan with Timing Schedule

Below is a sample meal plan for a day in the first 6-8 weeks after total gastrectomy (phase 1). This example has at least 1500 calories and 100 grams of protein. Your dietitian can help design a meal plan to meet your specific calorie and protein needs.

Phase 2

Once your weight loss slows and you are tolerating phase 1 foods well, you can begin phase 2. Phase 2 will be your lifelong dietary plan for eating without a stomach.

Just like in phase 1, remember to:

• Eat at least 6-8 small meals each day
• Eat slowly and relax while eating
• Chew foods completely before swallowing
• Drink liquids or soup 30 minutes before or 30 minutes after eating
• Limit liquids to ¼-1/2 cup with meals
• Eat protein at every meal and snack
• Avoid added sugars
• Avoid alcohol
• Use a food diary as needed if you experience any discomfort after eating
• Talk to your dietitian about your specific calorie and protein needs and how to meet those needs

In phase 2 you can:

• Begin to add higher fiber foods (fresh fruits, vegetables, nuts, beans and whole grains) back into your diet one at a time
  • Reintroduce foods one at a time to make sure that you can digest each new food comfortably
• Include well-tolerated fruit, vegetables, whole grains, beans, nuts and other whole, plant-based foods in your meals every day
  • Make sure you balance higher fiber, lower calorie foods (such as fruits and vegetables) with higher calorie, high-protein foods as needed to avoid losing too much weight

Use the chart below to help guide what you can eat and what you should avoid in each food group after total gastrectomy.

Phase 2: Foods to choose and foods to limit lifelong after total gastrectomy

*Products named serve as examples and do not imply endorsement by NIH. The fact that a certain product is not named does not imply that such product is unsatisfactory.

Factors That Alter Drug Absorption

How you dissolve, absorb and process oral medications — those taken by mouth — changes after a total gastrectomy. Bypassing the stomach and upper part of the small intestine reduces the time and surface area needed for drug absorption. There are some unique proteins and enzymes involved in drug absorption and metabolism (breakdown) in these parts of your digestive tract. Without these, the absorption of certain medications can either be enhanced or decreased, depending on the characteristics of that medication. 

You and your care team should carefully consider each medication and its use after total gastrectomy. Contact your clinical pharmacist or care team if you have any questions. 

After gastrectomy you have: 

• A higher gastrointestinal (GI) pH, which may alter how drugs dissolve 
• A smaller GI surface area, which means less opportunity for medications to be absorbed into your body
• Fewer transport mechanisms and enzymes to digest medications
• Faster GI transit time, and therefore less time to absorb medications
• Likely weight loss, which alters drug concentration levels in your bloodstream

Here are some general recommendations to follow after total gastrectomy:  

• Review your medication history with a clinical pharmacist and/or your care team
• You and your team may consider alternate forms of medications, such as transdermal (through the skin), sublingual (under the tongue) or intranasal (through the nose), when there are concerns with oral absorption 
• You may be able to crush some medications or open capsules to help them dissolve and help your body absorb them better 
• Always check with your pharmacist or care team before crushing or opening any medications
• Liquid medications may contain artificial sugar, which may increase the risk of dumping syndrome
• Discuss these medications with your pharmacist or dietitian before taking them

And try to avoid: 

• Timed or controlled-release medications, including those labeled ER, XR or CR 
• Medications that cause gastrointestinal irritation or require a highly acidic environment for optimal absorption 

Pain Medications After Your Gastrectomy

• Your pain management medications after surgery may come in multiple forms, including epidurals, intravenous and oral medications.
• Short-term use of oral opioids may be used as prescribed by a doctor for pain as needed.
  • Because there is a possibility of increased absorption of oral opioids after total gastrectomy, be sure to receive the lowest effective dose possible.
• Immediate-release acetaminophen tablets may be used as needed.
• Moderate amounts of Non-Steroidal Anti-Inflammatory Drugs (NSAIDs), such as ibuprofen and naproxen, may be used if needed for short periods.

Other Specific Types of Medications to be Aware of

Remember to discuss any medications you may take with your pharmacist and/or other members of your care team. 

Antibiotics

• You may require longer courses or higher doses of antibiotics for optimal absorption and treatment of bacterial infections.
• Your physician may use antimicrobial sensitivity tests to choose the most effective antibiotic for you.

Contraception

• After a total gastrectomy, you will want to avoid oral contraceptives (“the pill”) containing estrogens or progesterone due to decreased absorption (and therefore decreased efficacy).
• Discuss alternative forms of contraception, such as intrauterine or implantable devices, with your care team and/or OB-GYN before gastrectomy.

Medications for bile reflux

Bile reflux occurs when digestive liquid produced in your liver backs up into the esophagus. Bile reflux can occur after total gastrectomy. Refer to “Diet and Nutrition After Gastrectomy: What You Should Know” for more information about how to avoid bile reflux. 

• Bile reflux is not the same as acid reflux.
  • Therefore, you should avoid typical drugs used to treat acid reflux, such as proton pump inhibitors (e.g., Omeprazole, pantoprazole) and Histamine2 blockers (e.g., Famotidine).
• Your treatment for bile reflux may include lifestyle and diet changes as well as medications such as sucralfate.
  • If lifestyle and physical remedies do not help your bile reflux, talk to your dietitian or health care team for more information about possible alternative medications. 

Chronic Medications

• Your weight is expected to rapidly drop after total gastrectomy and reach a new stable baseline between 6 and 12 months after surgery.
  • Some medications, such as those used to treat hypertension and diabetes, are dosed based on weight and will likely require dose adjustments based on your new baseline weight.
• Close follow-up with a primary care physician is crucial during this period. 
• You should review your medication list with your gastrectomy care team and clinical pharmacist prior to surgery and in any follow-up appointments.

Pregnancy Prevention

Your body may not absorb oral forms of contraception (e.g., “the pill”) after total gastrectomy, which means oral contraceptives may not prevent pregnancy. If you do not want to become pregnant, discuss other forms of contraception, such as intrauterine devices or implanted devices, with your health care team and OB/GYN. 

Pregnancy After Total Gastrectomy

Preimplantation genetic testing (PGT)

PGT is a medical procedure that allows people who carry the version of a gene that causes an illness to screen embryos and ensure that a child will be born without that gene variant. The PGT process can be a part of in vitro fertilization (IVF). For more on PGT, see “Genetic Testing and HDGC.“

Nutrition before pregnancy

Good nutrition is important for fertility and for a healthy pregnancy. Good nutrition is also needed to prevent micronutrient deficiencies, to reach a healthy weight before pregnancy, to support healthy pregnancy weight gain, and to support fetal growth and development. See “Diet and Nutrition After Gastrectomy: What You Should Know” for more details on nutrition after total gastrectomy. 

Weight

Because your weight will drop and may not stabilize until 6-12 months after total gastrectomy, current guidelines recommend waiting at least that long, or until weight is stable, before trying to become pregnant. 

Recommendations for weight gain during pregnancy are available here:  Weight Gain During Pregnancy from the CDC.  

Talk to your health care team about your specific weight goal prior to and during pregnancy. 

Calorie and macronutrient intake

Calories are a common unit of measurement for the amount of energy a food provides you. Macronutrients are the types of nutrients your body needs in large amounts. The three main types of macronutrient are carbohydrates, proteins and fats. You can find the calorie, carbohydrate, protein and fat content of a food on its Nutrition Facts label. 

In the first trimester, people with a healthy body mass index (BMI) may not need to increase their calorie intake. In the second and third trimester, those with a pre-pregnancy BMI in the normal range need an additional 350-450 calories per day from nutritious foods and drinks. If your BMI is in the overweight or obese range, you need fewer additional calories per day. Talk to your dietitian and health care team about your calorie goals during pregnancy. 

Post-gastrectomy symptoms, such as early satiety (feeling full quickly), lack of hunger cues and changes in nutrient absorption can make it difficult to eat enough to gain the necessary weight for a healthy pregnancy after total gastrectomy. Additional pregnancy symptoms, such as nausea, may make it even harder to gain weight. 

See “Diet and Nutrition After Gastrectomy: Your Plan” for tips on getting more calories and protein. Talk to your dietitian if you have trouble getting enough nutrition to meet your weight goals. 

Micronutrients

Micronutrients are the vitamins and minerals needed by your body in small amounts. Even if you only need a little bit of each, these nutrients are critical for your health. 

Total gastrectomy increases the risk of multiple vitamin and mineral deficiencies, including, but not limited to, deficiencies of: 

• Iron
• Vitamin B12
• Calcium
• Fat soluble vitamins A, D, E and K
• Thiamine (vitamin B1)
• Folate
• Zinc

These vitamins and minerals are not only important for your overall health, they are also very important for fetal growth and development. 

Specially formulated vitamins, referred to as bariatric vitamins, result in fewer deficiencies than standard multivitamins after a total gastrectomy. These vitamin supplements are formulated to meet unique micronutrient needs after total gastrectomy. See “Diet and Nutrition After Gastrectomy: What You Should Know” for more information on vitamin supplementation after total gastrectomy. Talk to your dietitian and health care team about your specific supplement needs before trying to get pregnant. 

Prenatal formulations of bariatric multivitamins are also available to help meet the unique nutrition needs during pregnancy after total gastrectomy. Note: Standard prenatal multivitamins do not meet the micronutrient needs of an individual during pregnancy after total gastrectomy. 

Prenatal vitamins provide more folate, iron and B12, among other nutrients than standard vitamins. Most prenatal vitamins provide vitamin A as beta-carotene instead of preformed vitamin A, because too much preformed vitamin A is dangerous during pregnancy. 

Available guidelines recommend a specialist obstetric service to monitor micronutrient levels and supplementation during pregnancy. Talk to your dietitian, obstetrician and/or health care team about which specific prenatal multivitamin meets your needs and how to monitor your vitamin and mineral levels during pregnancy. 

In late 2018, Estefania E. Marchan and her husband, Peter Richman, decided to start planning for a family. When Estefania’s obstetrician asked if the couple wanted to undergo cancer screening as part of the planning process, Estefania, who had a family history of stomach cancer, agreed.

“It was pretty obvious to me that it was going to be something that was hereditary,” Estefania said.

Stomach cancer, or gastric cancer, is expected to account for approximately 1.4% of all new cancer cases in the United States in 2022, with an estimated 26,380 new cases. In the same year, there will be an estimated 290,560 new cases of breast cancer, 268,850 new cases of prostate cancer and 236,740 new cases of lung cancer. 

According to Jeremy L. Davis, M.D., Associate Research Physician in the Surgical Oncology Program, the relative rarity of stomach cancer in the U.S. can be attributed to improved food handling, such as the widespread adoption of food refrigeration, over the last century. However, stomach cancer remains difficult to treat.

“Stomach cancer is particularly deadly because it’s not very responsive to the treatments that we have,” said Davis, whose research focuses on sporadic and inherited forms of stomach cancer. “Although the disease is not common in the United States, it is very common throughout the world. And it's one of the leading causes of cancer death in the world because it's so hard to treat.”

Estefania’s genetic test confirmed that she carried a mutation for the CDH1 gene, a condition that significantly increases a person’s risk for developing hereditary diffuse gastric cancer. The service provider for Estefania’s genetic testing put her in contact with a counselor who identified a removal of her stomach — a total gastrectomy — as one of her treatment options. 

“My husband and I had talked about what this would mean, and what this would mean for future children,” Estefania said. The stakes were high — her mother, grandfather, great-aunt and great-grandmother have all passed away from stomach cancer. Estefania and her husband quickly met with a number of physicians in the D.C. and Maryland area about the surgery, including Davis, who ultimately performed the total gastrectomy as part of the research program at the National Institutes of Health.

“This is different from a gastric bypass or a sleeve gastrectomy, where surgeons are not removing the stomach or only removing part of the stomach,” Davis said. “In this case, literally the entire stomach is removed.”

Surgeons then connect the patient’s esophagus directly to their small intestines. After recovering from the procedure, people who have had a total gastrectomy are able to eat many of the same foods as before, though they usually eat six to eight small meals throughout the day.

Patients who have undergone a total gastrectomy face additional difficulties during pregnancy, where good nutrition is essential for the health of the fetus. The new absence of anti-reflux mechanisms can also cause bile to surge up into the esophagus, causing discomfort and nausea. “As the baby grows, a lot of your intra-abdominal organs are displaced and pushed up and out of the way,” Davis said. “There's the potential for consequences, and we've seen that in a few people.”

For Estefania, the decision was easy.

“We thought my risk of having cancer was already even higher than what we liked, compared to the risk of us not being able to have a family of our own. We thought we could always adopt and so we were comfortable with the decision to move as quickly as possible,” said Estefania. “By January 31, 2019, I had no stomach anymore.”

As Estefania recovered, she transitioned from liquids to soft foods that were low in fiber and high in protein. Eventually, she was able to return to eating many of her favorite foods.

“By six months post-surgery, I was basically eating whatever I wanted, and eating normal amounts of food,” she said. “But I am a lot more careful. I still prioritize protein and I don't eat a ton of sugar. But I can eat ice cream!”

At the one-year mark, February 2020, Davis gave Estefania the green light to go ahead with the pregnancy. After a delay due to the onset of the COVID-19 pandemic, Estefania and her husband began the IVF process in June.

“We decided that we really wanted to go the IVF route because, through IVF and pre-implantation genetic testing, you can ensure that your children don’t have the CDH1 mutation,” Estefania said. “It was also considered a high-risk pregnancy due to the need for proper nutrition, which can be difficult following a total gastrectomy, so I had a maternal and fetal medicine doctor who focused on high-risk obstetrics, as well as my normal obstetrician. And then I really had a lot of support from the whole NIH team.”

In March 2021, Estefania gave birth to her daughter, Rafaela. 

“My grandfather was diagnosed at a time when you couldn't even do genetic testing. They hadn't even actually confirmed that a mutation in CDH1 caused this cancer. By the time my mom had stomach cancer, they knew that a CDH1 mutation causes it, but there wasn't any extensive genetic testing available,” Estefania said. “I was really the first generation that could undergo the testing, surgery and IVF pregnancy, and now I have ensured that my daughter does not have to face the same risks that I did.”